When New York Governor Andrew Cuomo was first accused of underestimating nursing home deaths from Covid-19, his administration offered a simple explanation:
The state did not include nursing home residents who died at the hospital in its publicly published count of coronavirus deaths linked to long-term care facilities, authorities said, because it wanted to avoid a “double count” of those deaths in the state total.
But New York sets itself apart from other states by taking this approach to counting nursing home deaths, research experts said, a decision that made New York’s nursing home death count seem lower than it was. , and which is now under federal investigation.
“It’s hard to compare data at the state level, but New York is the only state that explicitly stated that they were excluding hospital deaths,” said Priya Chidambaram, a senior policy analyst at the Kaiser Family Foundation, a nonprofit research organization.
By contrast, officials in other states, including Minnesota, Connecticut, Massachusetts and Vermont, said in recent interviews that they found ways to total all deaths in nursing homes, including residents who died in hospitals, without counting them twice, by doing cross-references of reports. nursing homes with other data sources. Investigative experts, including Chidambaram, said they were not aware of any other state that counted nursing home deaths the way New York did.
That has left both lawmakers and researchers wondering why New York didn’t find a similar solution to avoid leaving thousands of nursing home deaths out of its reported total.
“New York is kind of an outlier when it comes to this topic,” said David Grabowski, an expert in long-term care and a professor of politics at Harvard Medical School.
Each state has developed its own method for counting deaths from Covid-19 in nursing homes, as well as the general population. And New York has explicitly said from the early months of the pandemic that its publicly published count of deaths in nursing homes only included those that occurred in the facility, rather than in a hospital or elsewhere.
The state took this approach to avoid including those deaths twice in its total of all New York residents who had died from Covid-19, state health commissioner Dr. Howard Zucker told state lawmakers during a meeting. hearing in August on the management of the infirmary by the administration. homes during the pandemic.
“We don’t want to count twice: this person died here and there too,” Zucker said, describing the Cuomo administration as “incredibly transparent in information.”
New York officials also said it was important to verify reports of residents who died in hospitals before releasing those numbers, as information provided by nursing homes was not always accurate, especially during the chaotic early days of the pandemic.
“It’s natural to assume that they may not have as much information as what happened within their walls,” said Gary Holmes, a spokesman for the state health department.
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However, that approach led New York to omit a large number of deaths from its publicly reported nursing home total until recently. The state had said that around 8,500 nursing home residents had died from Covid-19. But when New York finally included residents who died in hospitals, the total skyrocketed to about 15,000, more than any other state at the end of January, according to a state-by-state tally of long-term deaths compiled by the Kaiser Family. Foundation. . And the state only released the new total after its own attorney general issued a report last month accusing the Cuomo administration of not counting deaths.
The New York health department said the delay in releasing the number of hospital deaths was due to a time-consuming verification process. The Covid-19 reports that nursing homes and hospitals send daily only include the initials and age of residents who died “to protect patient privacy,” Holmes said.
While more detailed data on hospital deaths is available, the information is entered into a separate system that is often delayed and does not include the name of the patient’s nursing home, he added. “Great efforts have been made to ensure accuracy in reporting data from multiple sources.”
Holmes also said that the recently released figures did not change the total number of deaths in New York from the virus, as all nursing home deaths had been included in the state tally, regardless of where they occurred.
Officials in other Northeast states and elsewhere told NBC News that they took a different approach to compiling a full count of resident deaths, regardless of whether they occurred in a hospital or on the premises, to avoid the problem of double counting. that New York officials were concerned.
In Minnesota, for example, “deaths are classified by place of residence,” said Scott Smith, a spokesman for the state department of public health.
The status is based on self-reported data from nursing homes, which are asked to provide demographic information, date and place of death, and other information. Minnesota also collects data from hospitals, laboratories, medical examiners and death certificates to match reports and exclude duplicate entries to avoid double counting, Smith said.
Similarly, Connecticut uses self-reported nursing home data, which must report all resident deaths “whether they occur at their facilities or after being transferred to a hospital,” said David Dearborn, a spokesman for the state health department.
The state also relies on the state medical examiner’s reports to avoid double counting the total death toll, Dearborn said. “This process guarantees an accurate state total.”
Massachusetts uses a similar approach, crossing nursing home reports with death certificates to avoid duplicate entries to capture total Covid-19 deaths in the state, a state health spokesperson said.
While the pandemic was unprecedented in many ways, the data challenges associated with it are not new, said Grabowski, a professor at Harvard Medical School.
“Historically, public health officials have often had to distinguish between the place of death and the immediate residence before death,” he said. “I don’t see any reason why other states could classify previous residence and New York couldn’t.”
The basic data should have been readily available to New York officials, said Bill Hammond, senior health policy researcher at the Empire Center, a right-wing think tank that sued the state for not releasing its data on deaths in homes of seniors. According to the New York data collection form, obtained through the lawsuit, nursing homes are specifically asked for “the total number of Covid-19 residents who have died outside their facilities,” as well as the number total number of people who died at the facility.
“This is not a complicated thing to do,” said Hammond, who believes New York officials should have released both hospital and non-hospital death counts immediately, and then verify the information later if they thought it was necessary.
“They are using the need for maximum precision and the difficulty of reconciling the two data sets as a reason to postpone” the release of public information, he said.
There are other differences between the states, as well as broader inconsistencies in the data. New York and Minnesota, for example, are among the states that include probable Covid-19 cases in death counts, but some only count laboratory-confirmed cases.
Some states included staff members in the total number of deaths associated with long-term care facilities, while others did not include them or separated them. Some states took months to publish detailed information on nursing home deaths. And the facilities themselves may not always provide accurate information.
The long-term care industry itself is skeptical that more data would have made a big difference in the overall response to the pandemic.
“It’s just another piece of data that may or may not show something,” said James Clyne, CEO and president of LeadingAge New York, which represents nonprofit long-term care facilities. Has anyone looked at it and come to any conclusion? It’s not like anyone had this epiphany because this information was given. “
But researchers say complete information from states is important to understanding the full impact of the pandemic on nursing homes. During the worst months of the pandemic, that data could help public health officials decide where to send resources first, advocates said. It could also help researchers identify what factors left facilities most vulnerable to Covid-19 cases and deaths, and what policy decisions appear to help protect residents and staff members.
In the early months of the pandemic, for example, the Cuomo administration came under fire for requiring that nursing homes accept recovering Covid-19 patients discharged from hospitals, a decision aimed at clearing much-needed space. in hospitals. The guidance was effectively reversed in May, and state officials released an analysis indicating it was not a driver of outbreaks in nursing homes. But more comprehensive data on resident deaths could help provide more definitive answers, experts and advocates said.
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New York State Senator Gustavo Rivera, a Bronx Democrat who chairs the health committee, recently introduced a bill that requires the state to disclose the deaths of residents who died after being transported to the hospital, criticizing the decision. state to exclude them.
“Both families and residents have suffered without knowing what is happening at the facilities during the Covid pandemic,” the bill says.
The federal government didn’t start collecting national data on Covid-19 cases and nursing home deaths until the first week of May, and the facilities weren’t required to provide information for the previous months. So state and local governments were the only ones in the know since the start of the pandemic, which is another reason New York’s nursing home numbers are so important, the researchers said.
“Accurate data is the basis for policy that addresses real needs. What policies were the most helpful? What policies were the least helpful? “said Chidambaram of the Kaiser Family Foundation.” The lack of precise numbers did a disservice. “